I have found that there are all kinds of people who talk about herpes, but so very few who have dealt with congenital herpes. I am hoping to find others to post with who have dealt with neonatal hsv. My "oldest" son (they're twins!) also developed encephalitis, and it would be great to hear stories and offer support to other families who have dealt with this or are going through it.

I'm sorry to hear that you and your baby has to deal with this. What treatments or meds did they give for the baby? During labor, did the doctor examine you for open lesions or outbreaks? I know I seem to have more questions than answer, but I am looking forwards to having children someday.

I have yet to have children, but as with any woman with herpes this is one of my concerns. Did you know that you had herpes at the time your babys were born? Did you have Herpes 1 genitally? Did your doctors culture the area? Did you have a vaginal birth? If you wouldnt mind elaborating on your experience I'd be greatful! It seems to be a fairly rare occurence....
thank you
MRA

so sorry i took so long to check back on this thread! i am happy to answer your questions...

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Originally Posted by idunno78

I'm sorry to hear that you and your baby has to deal with this. What treatments or meds did they give for the baby? During labor, did the doctor examine you for open lesions or outbreaks? I know I seem to have more questions than answer, but I am looking forwards to having children someday.

I actually have TWO babies...twin boys! My oldest had disseminated hsv-1 and developed encephalitis. we were SO unbelievable blessed to have an excellent pediatrician who diagnosed him early and accurately. he was treated for 21 days with IV acyclovir. my younger boy was treated for 19 days. the survival rate is so low that we are amazed to have them both. my perinatologist (high risk ob) is great and didnt see any lesions or outbreaks. i've actually never had an outbreak, but we assume they contracted hsv from me.

Quote:

I have yet to have children, but as with any woman with herpes this is one of my concerns. Did you know that you had herpes at the time your babys were born? Did you have Herpes 1 genitally? Did your doctors culture the area? Did you have a vaginal birth? If you wouldnt mind elaborating on your experience I'd be greatful! It seems to be a fairly rare occurence....
thank you
MRA

i had no idea i had herpes! most commonly, mothers pass on herpes if they had a primary infection during the last trimester (can elaborate if anyone wants/needs the info). specifically, dr. stanberry says i would have been infected the last 2 mo of my pregnancy, but i spent all that time in the hospital! we were all shocked, to say the least, to learn it wasd herpes! so, the assumption is that i do have hsv1 in my genital tract. my docs didnt culture. even if we already knew i had hsv he wouldn't have. studies show that antenatal cultures are not indicative of shedding at delivery. the american college of gynecologists (ACOG) recommends careful monitoring for outbreaks and prodromal symptoms. i did have a vaginal birth. my water was broken only 6hrs before delivery. the longer the membranes are ruptured, the higher the risk of transmission in shedding mothers. my older baby, who developed hsv encephalitis, had internal scalp monitors during the last few hrs of my labor. the pricks in his skin were the first lesion sites. the ACOG recommends against internal monitoring in mothers w/genital herpes. you CAN have a healthy vaginal birth if you have herpes! and yes, it is a rare occurrence, although the incidence rate is rising. currently there are an estimated 2000 cases a year, but it's hard to know b/c drs are not required to report it. of those 2000, only about 600 are hsv-1 infections and the rest are hsv-2.

if you ever have questions, i will answer what i can. i can tell you that since you have hsv already and are not pregnant, your chances of passing hsv to your babies is 1-5%. the fact that you are already aware and educated makes it even safer for you. some doctors will even prescribe suppressive therapy during the last few weeks. your chances of healthy pregnancies are VERY good!

If you don't mind, can you tell us what has happened to the babies....are they going to be ok?

My babies were incredibly lucky. They have a great pediatrician who got them diagnosed very early. They were treated by great infectious disease pediatricians, including one of the top experts in this disease.

So far, at 5 months old, they are perfect! My oldest baby is falling behind developmentally, but he is a HUGE baby, and that is probably why. We have been told to expect impairments and that we will have to wait and see what they are and how severe they are, but all the doctors, therapists, and developmental specialists say that you could never tell they had HSV.

So, long answer made short (sorry for the wordiness) they are going to be fine. We may still have some challenges and special needs to come, and my oldest is at risk for a recurrence in his central nervous system until he hits about 6 months old or so, but so far so good! Of course, we would have done anything to have spared them that struggle, but that wasn't up to us. So we are content just to enjoy them and always be thankful for our miracles. And when you look at the statistics out there on this disease, you learn that that's what they are...miracles.

So, can you only pass it to your child with a vaginal birth if you are shedding at the time? And then if you don't have a vaginal birth, does that eliminate the possibility of passing it on? I know a c-section can be painful, but if it eliminates the risk, maybe that would be safer to do?

Technically, you can pass it on whether you have a vaginal birth or a cesarean. That gets a little detailed, but I can explain if you would like. There are documented cases of transmission even with surgical delivery. So no, having a c-section doesn't necessarily eliminate the risk. There are a lot of details that influence it. If you are asking specifically about vaginal births, then yes...your child is only at risk if you are have an active outbreak or if you are shedding (asymptomatic). And, the risk is highest in mothers who are exposed to herpes during pregnancy. In mothers who knew they had herpes before pregnancy, the risk is incredibly low, even in the case of shedding.

In general, however, a vaginal birth is safe and recommended if there is no active sign of an outbreak, either lesions or prodrome. Most cases of neonatal herpes seen after a vaginal delivery occur because either the mother did not know she had herpes or because she was contracted her primary infection during the last two months of her pregnancy. Or both. In those situations, neither the mother nor the physicians would have any indication that a surgical birth might be necessary. it's a really REALY heartbreaking way to find out that you have herpes.

Yes, thank you. And thank you for sharing your story. I'm not having kids anytime soon, but it is on my mind sometimes if it's even possible with herpes. I haven't really been able to find a lot of info on the risks so I really appreciate it!!

It IS possible for you to concieve, have a healthy pregnancy, and delivery a healthy baby if you have herpes. Actually, the risk of your baby contracting herpes is quite low since you already have the infection. The biggest risk is to mothers who do not know they have herpes or mothers who develop herpes during the last few months of pregnancy. There are a few really good resources on line.

Please don't let my story, or others' stories, about neonatal herpes scare you. It is important to know it happens and what you can do to protect your baby, but it is also important to understand that it is a rare disease.